New Registry Aims to Support Cancer Research
Published February 2006
Researchers investigating the causes of breast cancer have a new weapon in the fight against a disease that affects nearly 213,000 women and men each year.
The Breast Cancer Registry of Greater Cincinnati (BCRGC), created by UC's environmental health department and the only resource of its kind in Cincinnati, is now accepting applications from researchers for access to data that can be used for breast cancer study recruitment or data analysis.
The registry, governed by a board of community representatives and medical experts, was created with a three-fold purpose: to help researchers understand who has breast cancer in Cincinnati, identify contributing environmental and lifestyle factors and improve education about the disease.
"This is a rich resource for scientists," says Susan Pinney, PhD, associate professor of environmental health. "It's not just a name attached to a tissue sample. Each record contains personal and family history facts that allow the researcher to look deeper for causes of breast cancer."
That's because the registry gives researchers supplemental--yet critical--information that will allow them to investigate the causes of breast cancer as well as "quality of life" questions for breast cancer patients, such as the long-term effects of drugs, return-to-work and survivorship issues.
Working with local clinicians and advocacy groups, Dr. Pinney and a small team of UC researchers have collected detailed information on more than 3,000 women and men from the Greater Cincinnati area who have been diagnosed with breast cancer.
"In the past, researchers often had access to biological samples, without supplemental information such as hereditary cancer, previous medical treatment, eating habits and living environment," explains Dr. Pinney. "To isolate the root of the disease, that information is absolutely necessary."
BCRGC access is available to researchers who are recruiting participants for research studies that do not involve clinical trials.
"We want to know about breast cancer in our community," explains Dr. Pinney. "This tool not only allows us to better describe the demographic characteristics of area residents affected by breast cancer, it also gives researchers the in-depth information they need to understand the environmental and cultural factors that may contribute to the disease."
As with any registry, patient privacy is a priority and identities will remain confidential.
"We tell registrants that we only want their words," says Dr. Pinney. "We don't want to burden them by asking them to participate in too many studies."
All researchers are welcome to apply for access to the database, but usage rights are limited. Dr. Pinney estimates that the registry can handle a mix of eight to 10 research projects annually. So far, one project has been approved and a second is under consideration.
Each research proposal must go through a rigorous committee review of the study's design and research process. While final approval by UC's Institutional Review Board is not mandatory at the time of the preliminary request, Dr. Pinney stresses that a final-approval letter from the research-monitoring body must be presented before access can be granted to the registry.
Once access is approved, the researcher is permitted to contact a specific number of registry members, which is predetermined by the BCRGC staff based on the demographic needs of the study. Database privileges last for one year.